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AMOgirl

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AMOgirl Newbie
AMOgirl
Posted

Hi Everyone.

I just wanted to let you guys know how glad I am that you are here.

I have had chronic diarrhea since I was and infant. (I am 34) About 8 years ago I started getting joint pain and went to the Dr. who prescribed Naproxin. (it didnt help) so I stopped taking it.

Over the last 6 months the pain and fatigue has gotten to the point where I can't function. I have always had the diarrhea (which at times is EXTREMELY painful) so I didnt think anything about it.

I went to the Dr. last week and told him all of my physical problems ( seemed like a really long list) diarrhea, fatigue, joint/muscle pain, and overall just a really crappy feeling all of the time.

When I told the doctor about the diarrhea he couldn't believe that I had had it my whole life without a diagnosis. I am adopted and my family just considered it to be one of my oddities, I guess. When I was an infant my mom had taken me in because of my irritability and blow out diapers but they couldnt figure it out. So I just learned to live with it, only eating in the late afternoon or if I wasnt planning on going anywhere, etc.

So the Doctor said I think you have celiac disease. I had no idea what that was. So he drew some blood and told me to stop eating anything with gluten and come back in 2 weeks.

I went home and looked in my cubbard and cried, went to the grocery store and only found nut crackers and corn tortillas, I was really depressed.

So I had gone 9 days gluten free, and then saturday night we were out with friends ( having prime rib) and i ate 3 slices of bread ( it was wonderful!!!) but the next day I felt like a cripple again and today i am feeling a little better.

So this Thursday I am going back to the Dr. to get my test results for the blood work and I need to know what tests should I expect to see and what results will indicate celiac disease, etc.

Also, should I have my son tested?

Sorry this is so long.

Thanks,

Alyssa

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Carriefaith Enthusiast
Carriefaith
Posted

Welcome! :)

The tissue transglutamase blood test is highly specific for celiac disease, therefore if it is elevated than you would most likely have celiac.

Open Original Shared Link

However, if you want biopsies of the small intestine, you have to be consuming gluten or you may get a false negative test result.

Also, should I have my son tested?

If you indeed have celiac than yes your son should be tested because celaic disease can be passed through genes.

AMOgirl Newbie
AMOgirl
Posted
  • Author

Thank you so much for your reply.

Whenever i read the posts and so many of the other peoples symptoms seem the same it makes me want to cry. I cant believe there are so many people with this. I thought I was just a freak case. I went to a GI Dr. in my early 20's and he never did any blood work, he just put me on ulcer meds which didn't work so I never went back. I had no idea that pain and fatigue could be related to my GI stuff.

I will know more on Thursday, and Thank you.

Guest Viola
Guest Viola
Posted

Welcome Alyssa; You are certainly not alone in those symptoms. Although I'm sure we all felt that way before we were diagnosed.

Hopefully you will soon have your answer. If it is Celiac, and believe it or not, that answer is a blessing, you can control it with diet and start to get better. I know the diet sounds overwhelming, but we are all here to help you through it, and there really is lots of gluten free products and even normal food out there :)

And yes ... if you get a postive celiac disease result, get your son tested.

KaitiUSA Enthusiast
KaitiUSA
Posted

There is so much that you think you can't have at first but the selection of what we can have keeps expanding. We can have alot more then we think at first.

If you do have it make sure your son is tested and tell your blood relatives to be tested because it is genetic.

Welcome to the board and if you have questions just ask away :D

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
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      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
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